I have two wonderful sons. Samuel is almost 17 and has severe haemophilia A. Lewis is 6 years old and until the age of 2 was completely normal, your average walking, running, talking toddler but at the age of 2 he started to degenerate physically and is now less mobile and able than a newborn baby. Mentally he is fine. He has had countless tests - all normal. This blog is about life with Lewis.

Lewis Jeynes's Fan Box

Friday, August 31, 2007

Since we got back, we have been to a wedding, a garden party, to a butterfly/tropical farm and to Scarborough for a mini holiday!

First of all, the wedding!! Our friends Richard and Teresa finally got married on Friday 24th August - 1 year and 12 days after James and I got married! It was a lovely ceremony, Teresa looked absolutely gorgeous (as every bride does!) and sooooo happy! The weather was amazing (too hot in fact!), the whole day was very enjoyable and Lew loved the chocolate fountain! It did get quite emotional for James and I as we remembered our wedding just over a year ago when Lewis was fine except for his not being able to walk.

Me and Lew waiting for Teresa to walk down the aisle!

On the Saturday after the wedding, Richard and Teresa hosted a garden party to prolong the special time for them, and it was a lovely afternoon with delicious food, great company and again lovely weather! The children all had a great time playing and the grown ups had alot of fun too!

Feeding the ducks and swans round the lake with Granny and Grandad, Katy and Emily, Pat and her 2 grand daughters.

On Bank Holiday Monday we went to the Butterfly Farm place near Dinnington with Vandanna, Steve, Nikhita, and Jay. It was very hot, and very very busy, but still we had a good time. Lew took part in the Ferret Roulette (!) and won a prize!! Samuel also had a go, and won a prize and James the same! The whole family won a prize!

Lewis and a chick!

Samuel and a chick!

Samuel and Nikhita playing with the air hover thing at the Butterly Farm!

On Tuesday morning, Lewis and I set off for Scarborough to spend a bit of time with Lesley, Kevin and the children (Tobey and Callum - we also saw Rowan, one of the bigger boys, but not the oldest boy Liam). We had a great journey, very beautiful countryside, and after parking the car at the hotel, we walked a loooooooooooooooooong way (from the South Cliff) to the Sea Life Centre. Lew got to see lots of huge and bright and colourful fish, a rescue turtle, some sharks, penguins, otters and manta rays, and jellyfish plus he get very close to some crabs and a starfish!

We went on the funicular lift back up the cliff!We ended the day with a meal in Pizza Hut and then it was back to our hotel for an early night! On Wednesday we had a lovely walk along the front and then climbed up the hill/cliff (it was very steep!) to St Marys Church and then to Scarborough Castle. It was amazing! The views are breathtaking from so high up, and the castle was very interesting. Lew even had a go at jousting with the help of Lesley's husband Kevin who enjoyed it more than all the children!!Tobey had a go at jousting too!

We arrived home late on Wednesday evening and Lew went straight to bed. Unfortunately, on Wednesday night/Thursday morning at 1.30am Lew woke me as he was having a temperature seizure (his temperature was 39.1 so I gave him some paracetamol and checked his temperature again after 10 minutes - it had gone UP to 40 so I had to ring the hospital and we took him in). We were in hospital overnight, Lew's temperature sorted itself out, no sign of infection of virus and he was fine to come home on Thursday afternoon.

Today (Friday) we have been for a walk round the lake, feeding the ducks, with Kirsty.

Tomorrow we have Yolanda and family visiting for the day which is great as we havent seen each other for ages and Lewis adores his friend Joel!

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DONT FORGET: tickets will be on sale very soon for the Fashion Show on 9th November - £5 adults, children 14 and under free. Our friend Alison has spent ages arranging the show, and I havent been able to help at all, so THANK YOU SO MUCH Alison for all your hard work and we are so excited waiting for the evening to come!!

THANK YOU: Anna and Caroline for helping me through a bit of a stressful time being a worrywort! Its great to be able to moan to you both as I know you both completely understand what it is like living with a very special child and the challenges each day can bring.

THANK YOU: Lesley, Kevin, Tobey and Callum for making our mini holiday in Scarborough so very special and for all the 'my treat's that you gave us like ice cream and lunch and cups of tea and coffee! And thank you for Lewis' Sea Life t-shirt!

THANK YOU: Granny and Grandad for Lewis' super new car seat which arrived this week. We just have to wait now for the rep to come and fit it in the car as its way too complicated for us, but it looks like it will do a GREAT job!

HAPPY BIRTHDAY: Anna on Saturday! Enjoy the roller disco!!

A lovely photo of Jenna and Ashley (our friends in Wales) getting ready for Ashley's 18th Birthday Limousine Night out on Saturday!
A lovely photo of Lew's special friend Declan. We LURV you Dec! xxxx

Tuesday, August 21, 2007

We just arrived back late last night from our last minute 'holiday' to South Wales (Rhondda Cynon Taff) to visit Angela, Len, Kelly, Jenna, Ashley and Hannah. And not forgetting Roxy and Rocky the hamsters! We also got to meet Pete and Margaret (next door neighbours) who Lew also adored!
The Rhondda Valley is absolutely breathtaking and the people are lovely, so friendly!
While we were there, Ashley had her 18th Birthday party (although its actually her birthday today HAPPY BIRTHDAY ASHLEY!) so we had a great night where Angela cooked a splendid chinese meal! It was just like being in a restaurant, except the food was better!

Hannah and her mum Angela (who does not normally have pink sparkly hair!)

The 'chinese restaurant'!

Preparing the chinese restaurant in the garden!

Hannah and Lew.

Ashley, Angela and me at Angela's beloved cafe in Ponty!

Rocky the hamster! Roxy was fast asleep in bed!

Lew having some contact with Rocky.

This picture is Lew's first sight of Hannah the morning after we arrived in Wales. He was soooooo excited to see her!

Lew surrounded by gorgeous Welsh ladies!

Lew after sneaking some chocolate mousse! Complete with Welsh rugby playing Winnie the Pooh!

Beautiful views from Angela's back windows.

More Welsh ladeeeeeeeeees!

Thank you so much to Angela and Len for inviting us to stay with them and for making us feel so very welcome. Thank you Angela for being the most amazing cook! And thank you Jenna and Ashley for making Lew feel so very special and for treating him so normally! It was so lovely to know that you were speaking to him like you would any other 3.5 year old. It meant so much to me. A huge thank you to Hannah for being Lewis' second mother while we were in Wales! You will make a fantastic parent one day, but until then I hope you consider using your skills in a career in nursing, you are brilliant!

Thank you Margaret and Pete for the lovely Wales cap for Lew and my gorgeous gorgeous Wales salt and pepper pots which I love!

And thank you Jenna for Lew's Cymru rugby shirt which he looks sooooo gorgeous in, but I cant at the moment find the photos we took of him wearing it!

A few more thank yous:

Thank you to Sian for her letters and photographs! Always a pleasure to receive your parcels!

Thank you to Mel Counert for the lovely card!

Thank you to those people who have started sending in their sponsorship money for The Lewis Jeynes Fund from Mike Bennett's fantastic marathon run in Germany. Once we have collected all the sponsorship in, we will let you know what amazing amount Mike raised with his hard work and effort. We will also try to thank everybody individually once we are a bit more organised!

Finally, but never forgotten (although I did forget to send a card) HAPPY BIRTHDAY YOLANDA! I am sooooo sorry I forgot to send your card this year, but I will remember next year I promise! I hope you are having a lovely day! Lots of love always xxxx

Take a look at other videos of Lewis at YouTube

The Lewis Jeynes Fund

The Lewis Jeynes Fund was established to provide care and support to Lewis Jeynes and the success of the Fund has meant that we have also been able to purchase specialist equipment for other children with undiagnosed neurologically degenerative conditions in Doncaster and the UK.

Lewis and his friends around the UK all suffer from acute and undiagnosed life limiting or terminal conditions and very often specialist equipment is difficult to afford due to the changed circumstances at home. This is where the Fund can provide vital assistance to those in need. All of the proceeds of the Fund go straight towards helping Lewis, and other children and families like him and us.

Contributions should be sent to The Lewis Jeynes Fund, 15 Kentmere Drive, Doncaster, DN4 5FL or by BACS to Nat West Bank, “The Lewis Jeynes Fund” Account No. 35662565 Sort Code 60 06 39. You can also go into your local Nat West Bank and pay into the Fund over the counter.

7th December 2006

7th December 2006

7th December 2006

7th December 2006

At Homestart Christmas Party, waiting for Father Christmas with Aunty Nicola and Evie!

December 2006

Playing with Miss Jodie at Building Blocks Nursery

i love you much (most beautiful darling) by e.e.cummings

i love you much (most beautiful darling), more than anyone on the earth and i like you better than everything in the sky -sunlight and singing welcome your coming although winter may be everywhere with such a silence and such a darkness, no one can quite begin to guess (except my life) the true time of year - and if what calls itself a world should have the luck to hear such singing (or glimpse such sunlight as will leap higher than high through gayer than gayest someone's heart at your each nearness) everyone certainly would (my most beautiful darling) believe in nothing but love

Lewis' cousin Millie

January 2007

Lewis and his cousin Evie

February 2007

Lew and his cousin Anna

February 2007

12th December 2006

DRI Christmas Party - meeting Father Christmas!

30th December 2006

Lew in Ward 31, not very well

5th January 2007

Ward 31 - playing with my lovely balloons!

Lewis on Facebook!

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3rd September 2005

Page 7 Fella! Hendaye, France

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You will notice there are adverts on Lewis' website. These adverts are often relevant to what is on Lewis' website at the time and you never know what you might discover! And by clicking on them, you can help The Lewis Jeynes Fund too!

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June 2004

December 2004

25th December 2004

Lew and his cousin Millie - first Christmas!

March 2005

Lew on his Police bike!

June 2005

Watch out Wimbledon!

September 2005

At Ena's house in France

23rd September 2005

Lewis ready to go out!

Cards for sale

If you are looking for an interesting, unusual and original card design, but without the high cost, please do check out http://www.bbcardshome.co.uk/ for a great selection of unique card designs for any occasion and at only £1 a card plus p&p they really are a bargain!